Can anybody tell me, can you die of lupus and at ... - LUPUS UK

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Can anybody tell me, can you die of lupus and at what age does most of patiants die??

Shireenm profile image
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Shireenm
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35 Replies
Purpletop profile image
Purpletop

Lupus can cause a shortening of the life expectancy depending on its severity, the organs affected, the age of the person affected and their medical history and so many other factors. The treatment nowadays, however, is geared to better those odds and there is a lot of research going on for targeted medication that not only alleviate symptoms but cures the disease (there is no cure at the moment). We all hope there will be a cure found in our lifetime, meanwhile we take our medication, try and eat a good diet, do as much exercise as the illness allows us and hope for the best.

DonnyJM profile image
DonnyJM

All I can say is my Mum is 67 and has had Lupus diagnosed for 43 yrs and is still going strong so there is hope for us all yet.

Tigerlily4 profile image
Tigerlily4

Sadly it can. Really depends whether there's kidney involvement and how extreme it is. The prognosis will be different for everyone - it can be slow or fast onset. Men tend to do less well historically than women though.

DonnyJM profile image
DonnyJM in reply to Tigerlily4

I suppose that means I ought to get my sports car now then....lol

Diagnosed2012 profile image
Diagnosed2012 in reply to Tigerlily4

"Men tend to do less well historically..."

Jeepers !!!! I was diagnosed in 2012....as my username suggests.

My sister had lupus too. She had a severe stroke and kidney failure when just 21years young. She fought it for 16 hard years before she passed away.

It was a real shock when a skin biopsy revealed I had discoid lupus initially. And then my health rapidly went into meltdown. And I wondered if I had moved from discoid to systemic.

But as you quite rightly say, everyone is different. I try to keep my spirits up, by remembering that there are people with worse symptoms (lupus and other illnesses) out there, and being grateful for the fewbits of my body that still seem to work just enough to get me by each day.

That1morena profile image
That1morena in reply to Diagnosed2012

I'm sorry for your lost

foxglove profile image
foxglove

Hi Shireenm I am 74 years old and have had lupus since I was 13 (61 years ago?) and treatment maybe not what it is today - not that that is necessarily a bad thing, and am still here to tell the tale. Lupus generally lessens with age and I would think most patients probably die of something else...OLD AGE perhaps?

Elvadevaca profile image
Elvadevaca in reply to foxglove

Not in my case. I was diagnosed in 1986 and with mild symptoms. Two years ago 2013 I have had this flareup that only seems to progress. I feel I am seriously fighting for my life. My white cells are elevated to 16,000. I have pleurisy plus pericarditis with a case of MRSA since June 2015. The Dr's advice is to increase prednisone and pain medication for the chest pain. I'm scared, I never saw this coming. I just feel powerless and frightened.

Sarahbreh profile image
Sarahbreh in reply to Elvadevaca

Hi. I have my son with Autisim and I have him on the dr amy Yasko protocol. He is making amazing progress. I have read that poor methylation in the body can cause lupus. Dr Amy Yasko protocol improves methylation. I am seeing some excellent results in my son and have read that this protocol has helped people with autoimmune diseases. Might be worth googling and looking into it.

nancymullanmd.com/ebook/The...

lovemore108 profile image
lovemore108 in reply to Sarahbreh

Great to know, blessings!

dgleds profile image
dgleds

ya ..things now a days look a whole lot better than they use to with lupus....I guess like everyone else says, depends how bad your case is....look after yourself..good diet,rest,exercise,.....not too much stress..take your meds, go for check ups...should hang in there pretty good I'd say.

stewart1969 profile image
stewart1969

Patients with lupus are more likely to suffer a heart attack or stroke compared to those without lupus. Eating well (eg, a vegan diet rather than processed foods) will probably lessen the risk.

madmagz profile image
madmagz

Hi Life it's self can kill you so lupus is just an added risk. Years ago lupus was a killer but now with the intervention of modern medicines many of us live full and active lives. I have had it for nearly twenty years and have just had to "tweak" my life a little to work around the changes I have made due to being photosensitive and less mobile. Quite honestly the number of people killed on the roads who don't have lupus is much higher so you could say that having a car is a killer so I would say be thankful that you are breathing and get on with enjoying life.

Take care and make the most of every day that you have don't worry about what is going to kill you just enjoy the time you are here

Madmagz x

Slowmo profile image
Slowmo

Hey there, your question sounds as though it comes from someone who is feeling low and also worried about the long term impact of lupus.

As a number of answers above indicate severity of lupus, areas affected including organs will increase or lessen the risk of fatality.

I'm sure many would agree that we've all been worried at some stage or other that lupus will win and we will lose the battle to fight this illness, but the advice above is good, eat well, exercise when you can and rest as much as you need to, but one thing that really does affect me more than anything else is stress - so do all you can to minimise the levels of stress you suffer, this includes worrying about how lupus will affect you, maybe you need to talk things through with someone and say your fears out loud, I usually find if I get things off my chest they seem a lot better.

Take care, and be positive.

Shireenm profile image
Shireenm in reply to Slowmo

Thanks for the advise, I do feël very Down lately, had 2 strokes in 1 week, dont feel very well, my eyes are effected due to the strokes, I do have lots of stess at the moment, wich is out of my hands, so I am really trying my best to Cope, It feels If I will never beable to come with term with this horrible sickness. Thanks for being their. Xxxx

Natura profile image
Natura in reply to Shireenm

Shireen....could you take 81 mg of aspirin daily? I really believe the migraines r related to clotting part of lupus. I had a bad migraine for 4 days and when I saw my GP, he looked at my eyes and asked if I had a stroke recently. I Thought there was something wrong with my right eye. I said I don't know. I immediately started taking aspirin daily to thin the blood. My sister is a doctor and she takes aspirin daily. (She believes anyone over 40 years old should take).Low dose. I am now on an enzyme for helping my blood to clot normally. It is not a thinner. I have not had a migraine since that one I had for several days. Please take care...

Melinda profile image
Melinda

Lupus is different for everyone that has it. As far as I'm aware, most people who have Lupus today, should live a normal life span.

ozzie2 profile image
ozzie2

I wouldnt worry too much i must have had Lupus for many years and didnt know it but im 69 yrs in october so not doing too bad eh! try to think positive, ozzie2

tintin49 profile image
tintin49

this site has saved my sanity good advice from people who know thank you

Cateb profile image
Cateb

Hi there

I don't wish to scare anyone but one of my very good friends died from Lupus and Lupus related conditions at the age of 54, she was a wonderful lady who had everything to live for.

Systemic Lupus is a serious disease and we can't take anything for granted.

xxx

ozzie2 profile image
ozzie2

hi there, well i dont think there is an age, im 69 and still going strong so i dont think because we have lupus it shortens our life span, perhaps it depends on other medical factors, there are people dying a lot younger with other things like the big C!! so please keep an open mind ok, xxx

maalidog profile image
maalidog

hi, I was diagnosed at 23 and am now going on 52 but since 5 year ago have lost most of my vision due to the flaming consultant permanently keeping me on chloroquine all these years (they make me sick, they not supposed to have done that) and also for some reason the last 2 years I have deteriorated so that at the present moment I hardly feel like my body has any life in it, I swear I can feel myself slowly dying, I barely move at all , my life quality is so bad I keep wishing I did not have a life. take heart very few folk die of lupus not with todays medications, it is very rare, if you kept this question of dying through lupus in your head you will do yourself no good, it is highly unlikely so forget it , think positive and carry living life as a normal person.

dgleds profile image
dgleds in reply to maalidog

You feel like your whole vitality is gone, right Maalidog? I remember that feeling...They also should have checked your eyes every 6 months....sometimes you have to nag them to do it, but for some hydroxycholoroquine..or plaquinil can have side effects on eyes...

Jimt9763 profile image
Jimt9763 in reply to maalidog

Great words.

shawki38 profile image
shawki38

Lupus can cause a shortening of the life expectancy depending on the individual case. In february of 2013, i lost my cousin Mishinda due to a stroke and kidney failure. She was only 35 years old. Her lupus cause her to have two strokes before she had the last stroke in 2003 she had to learn how to walk again. In 2013 she have a severe stroke which cause blooding on her brain which she died on the February 19, 2013

Marie311280 profile image
Marie311280

Hi iv had lupus for 12 years now I'm 34 , your question can u die with lupus then yes u can, but it's not as common as it used to be, when I have my flair ups it always puts me into hospital, it effects my heart my lungs r really badly affected with lupus they are scared really bad, I can not go out side when it's cold I just can not breath at all I feel like my chest is getting crushed, just walking up steps gets me so out of breath, it's affecting my memory st the moment, it's affected my liver were it stores up fat , my kidneys infection after another, pains in my joints my long beautiful curly hair is no more just keeps falling out in length , I'm very low and depressed, iv put on so much weight, iv been getting chemo it's on trails at the moment but it stop all my symptoms for just over 6 months , it's meant to last about 12-18 months but only lasted 6 for me, I just hope it passes all the trails and gets past stage 2 so everyone can try it and hopefully give u a better quality of life , x

KKeane2015 profile image
KKeane2015

I'm 14 and I was diagnosed with lupus last month, it affects my kidneys also. Does this mean it could shorten my life span because I read it somewhere that it does but it depends on the severity, I can't remember.

Freckle1000 profile image
Freckle1000 in reply to KKeane2015

All you have to do is make sure your renal specialist contantly moniters your renal function and SLE activity. This is relatively simple medically but over your lifetime you are the one who will have to make sure you're Doctors do this. Educate yourself as much as you can about Lupus nephritis and associated pathology tests and be hypervigelent. If further attacks on the kidneys are prevented, you should expect to live a normal life span.

katonna1975 profile image
katonna1975

you must have a VERY MILD case.. Lupus is a PROGRESSIVE disease.. It does it's damage gradually, but the damage is irreversible..My Grandmother died at 47, my aunt died at 56.. I've had lupus for 22+ years(since age.. My entire body is covered with the effects of the inflammation.. i have lost the skin over most of body and i am covered with patches of dry, flaking, cracking, peeling CRUST.. my fingers literally burst open at the joints. Im 40 now and im praying to live 10 more years..OLD AGE MY ASS..

Jimt9763 profile image
Jimt9763 in reply to katonna1975

Hope you're doing better?

dgleds profile image
dgleds

when i was first told i had lupus, the rhumey didnt go into detail at all...He just said, "You have lupus"....He didnt say mild...or who, what, where, or even why he thought that...I really thought this is it, Im going to die soon....I even got my daughter in the elevator of the rhumey's office and said,"  I have really bad news"...Since then in 2013, things have gone back and forth...changed...I was on meds and now im not...I felt awful, but now i feel myself...(My life force is back)....However just in January the rhumey said its not very active my lupus, so dont come back ,unless.....Then this last week some rotten horrible pain in the second joint in my thumb for like 5 days....and supr stiff knee....I was having horrible sleeps, so might have made this happen...Last night i slept great, and no pain today....This Lupus etc is so up and down, and back and forth ,and mild and bad,...and all over the map for everyone...I try to just be my old self, and look after myself best i can, and enjoy myself best i can...

MrsSerrano profile image
MrsSerrano

My mom had it for 15 years. It affected her lungs, and she ended up with scleroderma as well . It was a horrible thing to watch my mom suffer. She definitely had a more severe case. She passed in 1999.

I wish you well.

Niamh9393 profile image
Niamh9393

Not being funny or rude but you all chat shit. I am 24 and got diagnosed at 11, rushed into great Ormond street in the back of a mini can with no medical escort because they destroyed by notes and in a coma for a month. They said I was lucky to be alive and I should be dead. It was too late it had already fucked every organ including my brain, the specialist from England,wales,Ireland and France came too see me and said he had never seen lupus so bad. I am now dying because I am in heart, lung, liver and kidney failure. I have advanced rhemotoid arthritis and raynards. I stopped taking my medication a year ago because there is no point and I feel better then ever. BUT IF YOU WANT TO KNOW THE TRUTH LUPIS WILL KILL YOU AND VERY PAINFULLY.

Goodnight and good luck xx

wagspe208 profile image
wagspe208

Are there any activities that can decrease life expectancy upon diagnosis?

Crohns, ra... done

ripauntydonna profile image
ripauntydonna

Depends if you have it realy bad then you will die young because you will end up with diabetes and lupus is wores then diabtes and diabtes well shorten your life by 10 to 20 years but saying that u can also get cancer from lupus witch is how my aunty donna died it can attack any part of your body she have thyroid problems from it and almost died from low iron because of the lupus she was not evan 50 when she died withch is a lot shorter then some one with just disabilities or orgens wood shut down she was in and out of hospital alot from it she had high blood pressure and blood clots in her lung legs and lots of other part of her boody she got gang green and obesity she did evrey thing the doctors said and when to docters more then need to and still die young if Lupus is worse than diabetes then obviously life is sorter Lupus is rarer than diabetes so they want to raise more money for diabetes and diabetes makes more money for pharmaceutical caperneys hins why thay say that you can live A relatively normal life and normal life expectancy this is false

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